EGFR and ALK positive - 1263430

pchu1234
Posts:1

Hi,

I have been recently diagnosed with stage IV lung cancer which causes paracardial effusion and pulmonary embolism. My ocologist has sent a biopsy for mutation research and found that I am both EGFR and ALK positive. The result was done by Princess Margaret in Toronto and they mentioned that they have never seen this before. Right now, I am on Irressa as I have more EGFR mutation. But they are still trying figure out how else to treat it. Has any doctor here seen both mutation came back positive before? Does the treatment plan become more difficult or complicated?

Thanks
Peter

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Reply # - April 26, 2014, 10:00 AM

JimC
Posts: 2753

Hi Peter,

Welcome to GRACE. I am sorry to hear of your diagnosis, but you've come to the right place for information and support, and it's good news about the mutations.

It's rare to have both, but the subject has been discussed here previously: http://cancergrace.org/topic/alk-and-egfr As Dr. West stated:

"I think it’s important to clarify whether the EGFR mutation is an activating mutation on exon 19 or 21 of the EGFR gene. I actually have seen a couple of patients with both an EGFR mutation and ALK rearrangement, but the last patient I saw with both actually has an exon 20 mutation on the EGFR gene, which isn’t associated with a particularly high probability of strong benefit from an EGFR tyrosine kinase inhibitor like Tarceva (erlotinib). Not surprisingly, at least to me, she had previously received Tarceva and progressed right through it, but she had an excellent response to the ALK inhibitor XALKORI (crizotinib).

I’m sure it’s possible for a patient to have both an activating (sensitivity-inducing) mutation in EGFR and an ALK rearrangement. There has been no study of such a situation, and it would fall to individual judgment, but I think there would be little enthusiasm for giving both together if a person might respond well to just one of these agents at a time. But the short answer is that there are absolutely no rules and no data to guide a treatment approach in that situation." - http://cancergrace.org/topic/alk-and-egfr#post-1257632

Wishing you a long response with Iressa.

JimC
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Reply # - April 26, 2014, 10:07 AM

catdander
Posts:

HI and welcome to Grace. I'm so sorry about your recent diagnosis. This is an extremely rare situation but I don't know that it makes it any more difficult than others. The difference being you may have more options for treatment. Since it's so rare there's no understanding how best to proceed. The idea of you having a strong/activating egfr mutation is probably as good a start as any.

We're glad you've found Grace and hope we can be of help through what I hope to be a long smooth road.

Janine

Reply # - April 26, 2014, 09:10 PM

Dr West
Posts: 4735

Everything I said before still stands. As we do more and more testing, we're going to see our previously understood rules broken sometimes. It's a good dilemma, since there are now two potentially very active oral targeted therapy options that could be very helpful.

Good luck, and know that if Iressa doesn't work for long, XALKORI (crizotinib) could do very well.

-Dr. West

Reply # - April 26, 2014, 09:10 PM

Dr West
Posts: 4735

Everything I said before still stands. As we do more and more testing, we're going to see our previously understood rules broken sometimes. It's a good dilemma, since there are now two potentially very active oral targeted therapy options that could be very helpful.

Good luck, and know that if Iressa doesn't work for long, XALKORI (crizotinib) could do very well.

-Dr. West

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